Interaction between doctors and parents of children with special needs: regulations and experience of informing

According to the Downside Up organization, in 40% of cases, parents are under pressure from maternity hospital workers who convince the family of the correctness of abandoning a newborn with an additional chromosome. The correct procedure for informing parents about detected violations in a child can reduce the number of refusals from children. 

Since 2022, the Coordinating Council for the Social Integration of Children and Young Adults with Disabilities and Limited Health Capabilities has been operating in Russia. Among the tasks he assists the subjects of the Russian Federation in introducing in the regions a unified procedure for communicating information to the parents (legal representatives) of a child if he/she is suspected or diagnosed with a disabling pathology or the risk of its development.

The way in which the parent is informed largely determines inclusion and acceptance, support or social exclusion, can lead to stigmatization of the family and entail risks of deprivation of the child. However, contextual factors are also important, including what is the infrastructure in the region where the parents live, are there helping specialists and communities, are there rehabilitation, treatment and other services nearby? All these elements are part of the ecosystem of family resources, which can experience deep and long-term trauma in the absence of information and support. 

In this project, it is planned to conduct focus groups, interviews and surveys of doctors and parents of special children in several Russian regions. The project is being implemented by the ILSIR under the leadership of Professor Elena Iarskaia-Smirnova at the request of the partner NGO "Center for Curative Pedagogics". The project is also attended by leading research fellow Daria Prisyazhniuk, research assistants Mikhail Korzh and Alexey Weiser, undergraduate students Anna Ocheret and Yana Murzina.